I remember the day I received the email from Can Do MS in 2017 about the pilot program for young adults with MS; a week-long whitewater kayaking trip in Tarkio, MT, with an organization called First Descents. It didn’t take me long to decide to apply. I love kayaking and had always wanted to try whitewater kayaking and visit Montana. This would be a dream come true. It’s hard to believe that just a year prior, I would not have considered such a trip to be a possibility for me.
In my 20s I started noticing severe fatigue, tingling in my lip, my left leg was numb, I was losing my voice, which we later discovered is due to a paralyzed vocal cord. I saw a neurologist for five years with what he described as a “potpourri of symptoms”, numerous MRIs, an EEG, Evoked potentials tests, blood work, a lumbar puncture, two neuropsychological evaluations, and no diagnosis.
The day I was diagnosed with MS, I was going to get a third opinion about what had finally decided to make an appearance on my MRI. I was presented with two options: the first, a brain tumor, and the second, a large tumefactive MS lesion.
Almost 10 years ago I was diagnosed with MS. 10 years ago I started my first DMT. Within five years I tried five. I was hospitalized numerous times for relapses in the first five years of my diagnosis. The most memorable relapse was in 2016 when I lost the ability to speak, and I dragged one of my legs for nearly six months.
In 2015, I faced the most devastating news thus far: the end of my career. I was in the top-talent pool at Hewlett-Packard. I managed teams all over the world. I traveled the US and to China, India, and Ireland. It was gone. And so was my identity. My relevance. I had to stop work for the reasons most people living with MS do: fatigue and cognitive issues.
MS is a disease that constantly takes. It takes relationships, careers, finances, physical and cognitive abilities, your self-esteem, your confidence. You constantly grieve.
But MS gives in a way that is sometimes hard to explain and identify in the moment. The day I received that email about the kayaking trip was one of those gifts.
The week I spent in Tarkio with 13 other people living with MS is an adventure, a gift, I will never forget.
As a former college athlete, I am notorious for pushing myself. But that week, I surprised myself in so many ways. I wasn’t concerned with being the fastest or the best. I took my time, I soaked it all in; the people, the conversations, the food, the river, nature, the new skills I was learning. I was so connected. I learned more, I listened more, and I shared more. I helped my new friends. I helped the staff where I could. I was part of a new family.
Every day on the river, I would look around at the beauty; I didn’t want to miss a thing! I saw a coyote, a bald eagle, river minks, fish. We even saw a bear on our last day!
Amazing things happened when I returned home. I continued advocacy with the National MS Society at the state and federal level. I have given testimony for several legislative healthcare issues. I was nominated to the National MS Society Board of Trustees and now serve as Secretary. I was honored with the District Activist of the Year Award in 2019. Earlier this year, I was nominated to serve on the first Community Review of MS Research Committee, and earlier this month, I was honored to speak at the Tykeson Fellows Research Conference to young researchers about the importance of MS research to the patient community.
And, the best news of all, I got married to a wonderful man in September in Hawaii.
The connections I made with the people on our kayaking adventure have lasted over these years. We all come from different states, different backgrounds, different experiences, different periods in our journeys with MS. But what I came to realize, is with all our differences we are more alike than we are different.
We are all human, we all live with MS, and we are all trying to remain relevant, keep our heads above the water, move with and through the tide, ebbing and flowing with life.
We know we are all bound together by our shared experience; the inaugural First Descents MS adventure, one of the best gifts MS has given me.
1 thought on “Multiple Sclerosis: It Constantly Takes but Ultimately Gives”
Powerful story, South Paw! Thank you for sharing and congratulations on the recent marriage!!! – Wolf